Pain is in the Eye of the Believer

As I’m writing this Katelin is into her third month with a cavity that needs a root canal. Perhaps, you are saying to yourself, “My God! How could this mother let her child’s teeth go so long without seeing a dentist and now the poor child needs a root canal?!” In the regular world that would be a fair question, but Katelin and I don’t live in the regular world, do we? Nor does any Rett family when it comes to pain.

There are four major aspects of pain that we deal with: pain our children can’t tell us they’re in; pain we know our children are in, but the doctors don’t believe us; pain everyone knows they’re in but can’t find or won’t do anything about; emotional pain. Emotional pain is for                                                                   another day, I’m writing about physical pain, today.

Take the first-pain our children can’t tell us they’re in.

Can anyone tell you have a headache unless you tell them in some way? I mean unless it’s like a migraine? You have got to say the words, or rub you’re temples, or go to the cabinet and grab some Tylenol or Motrin. Or let’s go for something even simpler-an eyelash in your eye or an itch that’s driving you crazy. How about a broken arm, a dislocated hip- bet you can’t imagine living with any of those in silence. But our kids do it every day. Very few have the words to say where it hurts or even that it hurts. How can you decipher that they are rubbing their heads because of headache when they rub their head all the time? For the children who aren’t mobile, can’t speak, throw in a high pain tolerance and that broken arm is going to go unnoticed for at least a little while. (bones become fragile due to seizure meds and non-weightbearing; they can spontaneously break during a seizure or from simple movements) How truly messed up is that?

Next, the pain we know they’re in but no one believes us:

It’s very true that parents and primary caregivers can tell the difference between screams. There’s a scream for hungry, bored, mad, pain. There can also be changes in behaviors- yeah, Katie may scream and there are times she throws food, but when she screams and throws food at the same time that sets off alarms in my head. Why doesn’t she want to eat? Is her reflux acting up, is she constipated? Is it worse? Case in point- when Katie was almost 18 I got a call from the school… Katie has been throwing her food the last few days. Now, to throw food was not entirely unusual, but to consistently throw food was. I took her to the GI and said there is something wrong. After about an hour she was almost ready to just say go up on the reflux meds, but I looked at her and said…there is something wrong. You have to find it. And, she said, “well we checked for gall stones a year ago, but I suppose we can check again, though they don’t usually form that quickly.” Katie and I were lucky. We had a doctor who trusted my opinion, how well I knew my child. She had her gallbladder out the day after turning 18. But, lots of the time, our kids aren’t that lucky. They are turned away by ER docs and others constantly, to only a few days later be admitted for pneumonia, intestinal issues, the flu, truly any number of reasons. If you ever want to see an emotional mess go find a Rett mother trying to convince a stupid doctor that there really is something wrong with their child only to have them turn their backs.

Now, pain everyone knows they’re in but can’t find or won’t do anything about:

The pain we can’t find. That’s a tough one, even for the docs. Our kids get put through test after test, sometimes pretty invasive testing like an endoscopy or an MRI under anesthesia and…nothing. Everyone knows but nothing can be found, all for the sake of silence. And we watch those tears and feel completely lost, helpless, a failure.

But, let me tell you one thing, you will never see a mother/father fight like hell as a Rett parent does when the doctors KNOW what’s wrong and pretty much go…”oh, well”. Think it doesn’t happen, pshaw. The stories I’ve heard would make anyone furious. No “normal” human would be made to suffer through what our kids sometimes go through. I can’t tell the other parents’ stories. But, this brings us full circle to Katie’s cavity needing a root canal.

Two years ago, Katie had a teeny tiny cavity on her front tooth, just a dot. I had just moved to California and started looking for a dentist that could follow her. After nearly a YEAR of being sent to different dentists and turned away because of one reason or another, an office was found 4 hours away that would actually see her. So, I drove those four hours and because they couldn’t x-ray the cavity on the front of her front tooth, they turned her away; the dentist would not say it was a cavity without an x-ray. He wouldn’t even do an actual exam of the tooth. A couple of months went by and I brought her back because it was worse. Same thing. I told the dentist, “I’m not leaving this office until you stick that pointy metal thing in her tooth and tell me it’s NOT a cavity. He acquiesced and yes, I was right. That was almost 6 months ago. Her cavity is still not fixed. Three months ago it abscessed. In the end it took calls and letters to the California Governor’s office, the California Senate and the U.S. Senator for California’s office for a dentist to finally say they would do a root canal. If they can’t, they’re going to pull her tooth. I don’t really need to say it, because I know you are all thinking, “I would NEVER put up with that!” But, then, you wouldn’t have to because you aren’t disabled.

Here’s a little more reality for you-I know it’s JUST a tooth, I’ve had ways to ease her pain. Other parents have watched their children suffer needlessly in much greater ways. Our children and other disabled children and adults are some of the bravest and strongest people you will ever meet. They somehow manage amongst all this unfairness to find reasons to smile, to laugh, to love. They face every single day knowing within themselves that this might be the day they get an eyelash in their eye, or have an itch they’ll never get scratched or it might be the day they break their arm and no one will figure it out for days and yet most days they wake up with smiles for their momma. Most days I wake up and silently beg for Trofinetide to hurry up. My girl is my hero and the bravest person I know. Pain is in the eye of the believer; Beauty is in the eye of the beholder. Behold, beauty-




This entry was posted in bone deformity in Rett syndrome, Communication, Neuren Pharmaceuticals, Pain in Rett syndrome, Rett Syndrome, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial and tagged , , , , , , , . Bookmark the permalink.

4 Responses to Pain is in the Eye of the Believer

  1. Wow that is a hard journey, it sure can help others not to judge parents when they read these accounts. Thank you for your brave daughter and for you her parent filled with love and compassion and understanding. May you be blessed in this day as you walk it out together.

  2. melelllan says:

    Thank you we are 🙂

  3. Theresa Smits says:

    I follow your blog as I’m invested in Neuren Pharmacuticals and long for the day that ‘our’ drug will be available for all suffers of this horrid disease …. my heart breaks for you …. have a look at this website … something that may assist you with determining the level of pain your daughter is experiencing will be available from June … …. sending strength 💞

    • melelllan says:

      Thank you so much, esp for Trofinetide. I have been blessed by the many who are involved in it, but mostly by the interest and caring they have shown my child.

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